What Fatigue? A few quotes from the literature on ME and fatigue, Greg Crowhurst

What Fatigue?

A few quotes from the literature on ME and fatigue.

by Greg Crowhurst  |  13 May 2009

. Why try and validate the word “fatigue” when the word is so despised by the ME community and is so dismissive of a genuine ME sufferer’s multi-system dysfunction? Fatigue so does not describe the illness I have and therefore it downplays, demotes and disregards my physical reality and my serious disease. I am shocked horrified and flabbergasted by the crass title of a new magazine : “Fatigue” – surely it cannot possibly be about ME ? Linda Crowhurst 13 May 2009

. ‘“Fatigue” is the wrong word. Fatigue is a silly word.’ (Dr Betty Dowsett in Colby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, Ipswitch)

. Myalgic Encephalomyelitis (M.E.) is not synonymous with being tired all the time. If a person is very fatigued for an extended period of time this does not mean they are having a ’bout’ of M.E. To suggest such a thing is no less absurd than to say that prolonged fatigue means a person is having a ’bout’ of multiple sclerosis, Parkinson’s disease or Lupus. If a person is constantly fatigued this should not be taken to mean that they have M.E. no matter how severe or prolonged their fatigue is. Fatigue is a symptom of many different illnesses as well as a feature of normal everyday life – but it is not a defining symptom of M.E., nor even an essential symptom of M.E. Jodi Bassett http://www.ahummingbirdsguide.com/fatigueschmatigue.htm

. Dr David Bell M.D (1995) describes the word “fatigue” as: “A very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness.” (Bell, David S MD 1995, The Doctor’s Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts)

. “The term[s] ‘fatigue’ and ‘chronic fatigue’ never existed in this entity until it was put into [the name] in 1988.The whole concept of fatigue has warped our understanding of this illness.” Byron Hyde, M.D., The Nightingale Research Foundation, Ottawa, Canada (ME Society of America : http://www.cfids-cab.org/MESA/framework.html )

. “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.” Laura Hillenbrand, Bestselling author of Seabiscuit (ME Society of America : http://www.cfids-cab.org/MESA/framework.html )

. “Patients are united in their dislike of the term ‘fatigue’.” Thomas Hennessy, Jr., RESCIND, Inc. (ME Society of America : http://www.cfids-cab.org/MESA/framework.html

. While the word “fatigue” was occasionally used both by Ramsay and in the Canadian definition, “fatigue” is too broad and inaccurate a term. A disease this severe should be given a more serious name than “fatigue.” Maryann Spurgin 2007 http://www.cfids-cab.org/MESA/framework.html )

. Fatigue is an inappropriate label because the fatigue experienced in ME/CFS is NOT normal fatigue whereby energy is promptly restored. Bruce Caruthers and Marjorie van de Sande: An overview of the Canadian Consensus Document http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

. In reality, “fatigue” is only one symptom of this disabling illness, which is actually a complex interaction of neurological, endocrine, and immunological disorders. People who suffer from CFS are not tired. We’re sick.” Nonpartisan ME/CFS Petition http://www.petitiononline.com/CFS2004/petition.html

. Dr Byron Hyde MD (2003) explains: ‘The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.’ Hyde, Byron M.D. 2003, The Complexities of Diagnosis in (ed) Jason, Leonard at et al. 2003 Handbook of Chronic Fatigue Syndrome by Ross Wiley and Sons, USA

. In 2003 The Canadian Expert Consensus Panel published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome, making it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. (Carruthers B et al (2003) Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome. 11, 1, 7-115.)